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Children with Cancer

(834 Posts)
Twunk Tue 03-Sep-13 18:04:08

Sadly we need a second thread :-(

My son Alex was diagnosed with ALL (Leukaemia) in July and we are making our way though the 2 years of treatment that are given here in the Netherlands.

If you want support, or wish to share your story, or can give support please do join us.

It's a shitty journey but together we'll get through it.

minmooch Mon 10-Feb-14 07:12:51

Oh mmmmsleep glad you arrived safe and sound. Next few weeks sound gruelling but you will get through it. Xxx

Unbuckle glad you are 'out' and fingers crossed line stays clear. Xx

Trazzles hope infection clears up pretty fast and does not require any stays in hospital xxxx

Twunk getting back to normal takes strength after what we have all been through. Yay for his hair growing back. My Will still has very soft baby hair since his grew back.

As for us we are still here. Walking virtually impossible. Stair lift fitted to get him upstairs to the bathroom. I am completely numb. I have no emotions left at all. It all feels weird.

Love and strength to everyone xxxxxx

minmooch Mon 10-Feb-14 07:13:48

Twunk I seem to have missed these xxx off my post for you.

Twunk Mon 10-Feb-14 13:39:46

Hello Min

I'm sure the numbness is to help you to keep going. You are always in my thoughts. Love and strength to you too xxxx

minmooch Mon 10-Feb-14 20:14:20

We had an appointment with the consultant on Friday. She has offered DS a further treatment of half doses of Temozolomide and etoposide to be taken one in the morning and one in the evening for 5 days out of a 28 day cycle. It won't cure him. It may relieve his symptoms for a little bit. It is meant to be fairly tolerable but he hadn't tolerated any chemo well so can't imagine being that much weaker he will tolerate this any different.

Neither his Dad nor I want him to have it. He has been out through too much already. He wants to fight to the end. It's like asking your child how they would like to die - soon? Or a little bit longer but you will likely feel totally crap for that extra time?we have told him we don't want him to have it but at the end if the day as he is over 18 he makes the decision.

We go back to the hospital tomorrow to start chemo again. I feel sick at the thought if what it will do to him. But I have to support him against my feelings.

It's all pretty horrendous sad

MarnieMadden Mon 10-Feb-14 20:27:44

minmooch I am sorry you and your family are having to go through this. My thought are with you all xx

unbuckle Mon 10-Feb-14 21:14:32

(((Min))). I can't think how hard it is for you, and i imagine you must be so scared about will's choice. I wish there was something i could say or do. Xxx

Twunk Tue 11-Feb-14 09:24:52

You're right Min - it's his decision and I'm sure he's thought about it. I can totally understand you not wanting him to take it. Presumably he can stop anytime if the side effects get too much?

Gentle hugs on a Tuesday ((((()))))

minmooch Wed 12-Feb-14 15:24:18

Yesterday was truly awful. I started crying as soon as we got to the hospital and didn't stop until I went to bed. He looks so poorly I can't believe they gave him the tablets to start at home this morning.

First lot of chemo given this morning followed by two vomits.

Have had some good friends visit today, one a good friend of Will's and we have laughed and laughed. - who would have thought we could laugh at a time like this?

Love to all xxxxx

Twunk Wed 12-Feb-14 15:50:21

Yesterday sounds appalling Min. And I'm sorry to hear he did vomit after the chemo as you feared.

So glad you've been laughing today. Sounds like the perfect antidote to yesterday xxx

TabithaMcKitten Wed 12-Feb-14 21:17:35

Oh min :-(

It doesn't help, I know, but I am thinking of you and your lovely boys x x

lovelychops Fri 14-Feb-14 20:15:27

Hello, just wondering how everyone is getting along?

I haven't posted since around the time of DD's diagnosis, which feels like a lifetime ago even though it's weeks. Things seem ok but DD is in hospital with a bug and high temp. Thought she'd be home tonight but looks like it will be early next week now. At least she's in the best place.

Valentines love to all x

mmmmsleep Mon 17-Feb-14 01:47:45

hi lovely chops. I'm glad the dust has settled a bit for you. I hope dd has escaped from hospital. infections have been a very frequent feature of ds' treatment too. Let's say my overnight bag now includes a plate cutlery and bowl (because I got sick of not having any in kitchen) as well as a hip flask for a little amaretto hot chocolate when I've had enough and need a chocolate cuddle ;-)

min I hope you've managed some more giggles. we have to find smiles amongst the tears. I remember laughing with my mum when I was looking after her in her final weeks. she was only in her 40s. it was emotionally and physically exhausting as you know. Sometimes our dark humour disturbed the nurses that visited I think but hey I have some very fond memories of those weeks and the close times we shared despite the many indignities that cancer hurls at you. massive hugs to you xxxx

hello to everyone else!!
We're settling in in the USA. things are very different here to the uk in terms of how chemo and medical life is approached. bit of a culture shock that is taking some getting used to. I also feel very spoilt that our community nurses in uk come put to our home to do ds' bloods bungs and dressing rather than go to hospital. that and an expensive error in medication left at home that led to a $268 bill for 30 tablets for a family member and I thank my lucky stars for the NHS! there are lots of positive things like our own room at all times and fridge on the room!

Twunk Mon 17-Feb-14 11:04:28

Hello mmmmsleep and Lovelychops!

Mmmmsleep we have no community nurses - all tests and treatments require a visit to the hospital. Tbh it is a bit of a pain at times! Hope things are going well xxx

The first infection is very scary lovelychops - so bless you. I hope you're out already (or very soon).

We're waiting for a date for Alex's port to come out. It's half term so at home - I'm still nervous of crowds even though I don't have as much reason to be! Tomorrow we are going to see a friend in Germany - it's only 3 hours away (and 2.5 hours from the hospital) so my brain can cope with that. I hope!

Sillybillybob Mon 17-Feb-14 11:32:09


We're trundling along. Joe's line infection turned out to be a non-starter thank goodness. Been to hospital today for J's first post-treatment check up but there's nothing they can tell us at the moment beyond "well, he's looking really well!". So that's scientific then...

Checking him again in a month ( because of his dodgy leg) and then will think about getting his line out. We're going on holiday in early April and I was really hoping his line would be gone by then so he could swim and play in the water etc but looks like that isn't going to happen... Plus the ongoing worry of line infections... Bah. I just want it OUT!

labtest Mon 17-Feb-14 18:00:55

Hi. Haven't posted for ages. Beth is 5 months off treatment for ALL now and had her port out last Wednesday. My thoughts are with you all.

Dwinhofficoffi Tue 18-Feb-14 06:21:06

Hi all, although i don't post here I do read. The child who I work with and have worked with both in school and at home ( in a complementary ed and support capacity) well after the all clear in May they think the leukaemia is back. He is the most amazing wonderful super boy and his family are fab too. Over the years I have got so close to him and his family I feel so so sick. They are doing a bone marrow test today to confirm and find out the type. I know there is a small chance that the bone marrow might come back ok but I also know this is unlikely.

Sorry for ramble I just need to clear head.
Hope that's ok.

Twunk Tue 18-Feb-14 16:32:44

Oh Dwin it's not always the case, but I think the rate of relapse is something like 20% in general. Completely shitty I know when they've already been through so much sad.

Let us know how he gets on.

Dwinhofficoffi Tue 18-Feb-14 18:40:58

Bone marrow results wont be back until Friday the Dr has been more positive today and is more hopeful that it is a really bad virus. It s just this awful waiting game.

Twunk Tue 18-Feb-14 19:51:53

Fingers, toes and eyes crossed xxx

Sillybillybob Tue 18-Feb-14 21:06:31

labtest that's great news!

Dwin everything crossed here for some good news too.

I'm finally biting the bullet and taking DD to the GP. I struggle with anxiety but am convinced she has neuroblastoma too. A tiny percentage carry a gene where it runs in families. I know it's irrational but I'm so scared we are going to find out she has it too.

A fellow nb mum I was talking to about it said she'd had the same concerns in her family and had been politely told by one of the doctors that if you can see signs of cancer in your perfectly healthy child the. It's you that needs the medication. Maybe I do. But I also need to know that my DD's symptoms are not nb.

mmmmsleep Tue 18-Feb-14 22:11:27

dwin. hope your charge gets the all clear. it's horrid waiting :-(

sillybob if you're worried I'm sure your gp would refer...they would be brave not to. nb are rare so once you've entered that rare zone the phrase "it's rare for siblings to have it too" becomes less reassuring I know. I'm not saying I think your dd has nb too. just saying I understand your anxiety as someone else with rare tumours in family and I would expect that to be responded to. once dd gets the all clear that's the time to send you off to a counsellor not the other way around. if you come up against resistance I find the phrase "what would you do if this was your child" often helps. good luck and I look forward to you posting that you're sitting down to a relaxing glass of wine to celebrate the all clear.

ds has yet another op on Friday. his usa eye dr thinks it needs to be done to save vision. back to rock and hard place position again. glad I asked to get seen here. I hate to think what the outcome might have been if we'd just left follow up until return to uk! but then they are more interventionist in usa so who knows...
big wave from sunny states to you all x

mmmmsleep Wed 19-Feb-14 13:12:56

thinking of you min xxx

Dwinhofficoffi Wed 19-Feb-14 17:53:04

After what has felt like an eternity the bone marrow test came back clear. Whilst they are still unsure as to what it is they now know what it isn't.
mmmm-Hope Friday goes ok, will be thinking of you.
Silly- I agree it's worth pushing to have DD referred for the test.
Twunk - Thanks for the crossed fingers.

minmooch Wed 19-Feb-14 18:06:33

Dwin that's great news.

mmmmsleep hard and rock place - we all know it well. Hope the op goes smoothly on Friday. Are you coping ok so far from home? Xx

Silly do whatever you need to do to set your mind at rest. We have been under the care of St Marks hospital for years as we have bowel, brain and ovarian cancer rife in our family. They now know it is a genetic mutation so we have all been tested. I do not carry the gene so Will's tumour is nothing to do with our family gene - just bad luck. But it means that my other son is not at any greater risk than most people. I am sure your GP will understand your concerns and should do everything to help. Xxxxx

We are still here. Will has finished his 5 day course of chemo. Not too much sickness but he has a rather nasty rash which I am keeping my eye on. Bloods are ok, symptoms are still there so we are just plodding on. Eating lots. Nights are difficult as Will has panic attacks but we are getting through.

Much love to everyone xxxxx

minmooch Thu 20-Feb-14 01:23:18

We are now in hospital. DS thought he was having some seizures at home so I called for an ambulance. He looks like he may have a bleed in the tumour area. On top of that he has shingles and a urine infection. A very poorly boy. He is very confused and frightened and so am I.

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